Cat

A very good autistic friend of mine is noted for saying 'if you know one autistic person then you know one autistic person'. I can totally identify with this on a personal level having two autistic sons myself who are polar opposites. My eldest is what I think many people would assume was a typical AS person (except there is no such thing as a typical AS person) my youngest on the other hand is outgoing, extrovert, not only loves taking part in many sports but is also good at them which kind of bucks the trend when it comes to autism or does it. I have no doubt at all that my yougest is also autistic even though he is about as far removed from presenting like his brother as is probably possible. I suppose what I am saying is that no two autistic children/adults will present the same even when they are brothers. That said it does not mean that your youngest has AS only an assessment for ASD could tell you that. Not everyone with AS will have a processing delay. My eldest certainly does not however my youngest does. Another saying that my autistic friend has is 'there is no one more individual than an individual with autism' Cat

I am passing the following information which was sent to me via one of the Lamb Inquiry members. Lamb Inquiry Stakeholder meetings 16th and 30th July 2009 London 16th July: 10.00am – 2.00pm London 16th July: 5.00pm – 7.00pm Leeds 30th July: 10.00am – 2.00pm We specifically expect and welcome parents to attend and contribute. Brian Lamb invites you to attend one of three meetings to be held in July. These meetings are designed to bring together parents and professionals to work with the Lamb Inquiry to shape proposals for change. Aims of the meetings: • to update delegates on all aspects of the Lamb Inquiry •to provide delegates with evidence from research, from visits and meetings, and from the web survey • to seek input from delegates on the areas where the Lamb Inquiry needs to make recommendations The meetings will provide a combination of information from the Inquiry and opportunities for delegates to discuss proposals for change. Brian Lamb is chairing these meetings and staff working for the Inquiry will be there to provide updates on what the Inquiry has found to date and to listen to your ideas. The Lamb Inquiry was established as part of the Government’s response to the House of Commons Education and Skills Committee Report Special Educational Needs: Assessment and Funding. The Lamb Inquiry, under the chairmanship of Brian Lamb, the Chair of the Special Educational Consortium, is investigating a range of ways in which parental confidence in the SEN assessment process might be improved. For more information on the Lamb Inquiry: www.dcsf.gov.uk/lambinquiry These meetings are FREE and are being organised by KIDS charity for the Lamb Inquiry. Spaces are limited and will be allocated on a first come, first served basis. If you have not seen this elsewhere and do not have a booking form for these meetings and would like one please conact me via pm with your e-mail address and I will forward a booking form to you. Cat

<'> <'> <'> You cannot 'fix' autism simple as that because people with autism are not broken. There are things that you can do to help someone with autism who is finding or has found life difficult. You have done just that for your son who is 'your' son and that in my book makes him someone who is worth investing in. Professionals do not come complete with a magic wand. They do not have all of the answers and they do not have a cure all pill to make all of life's problems disappear and I am not just talking about autism. There is only so much that professionals can do for any of us sometimes we just have to live with what we have got and find ways to work with it. If your husband cares to read the National Audit Office Autism report he will find that service provision for adults with AS and HFA is almost existent. If you take that on board it beggars the question where do you find these professionals who will help you to sort out your life. They simply do not exist for many of us. You cannot access something that does not exist. In my VERY unprofessional opinion your son probably needs a little time to self-repair then with some guidance and a clear understanding that what he has got is for keeps he might be able to plot a future for him-self. Statistics regarding autistic adults and autism are quite grim sadly. At the moment there are 15% of the autistic adult population in some type of employment. We are only just at the very beginning of trying to improve the quality of life for adults with autism and provision. There is a very long way to go. If you are lucky enough to live in Liverpool, Northampton or Surrey you will have a specialist AS team who can probably be of some help to you if you do not then there is very little on offer. For what it's worth I think that you are doing a great job with your son and the right thing for him at the moment. It's all too easy to say when something does not work out quite as we expected that someone else should be dealing with it but when it come to our children it's not that simple and in a way nor should it be. We have two sons with ASD, one aged 21 and one aged 12 they are not a problem to us. Their ASD often presents us with challenges some of which have been very difficult to find a way through but they are 'our' sons and we don't want them to spend their lives being someone else's problem. It sounds as if your husband is either in denial or is just hoping that as usual you will take over everything that needs to be done. Maybe he needs to spend some time trying to find out about his son and what makes him as a person tick. Hope that makes sense and is not way out of line. Cat

I have tried everything with my son and nothing works in fact trying to keep him awake during the day so that he will sleep during the night resulted in insomnia and made everything worse. What I will say is that when he is feeling OK health wise his sleep pattern can become almost normal. However during the last few months he has had a great deal to deal with in his general health and he has been quite poorly, we have again seen a reversal in his sleeping habits. I won't say that I have given up because I will never do that but I am learning to live with it. I have also laid down some rules about what is and what is not acceptable at 3am, and cooking is simply not on the acceptable list. My son has a kettle in his room and I will tolerate a Pot Noodle if necessary otherwise he has to eat things like cereal or sandwiches and even then the sandwiches are made in advance of my going to bed because I wont have him in the kitchen while the rest of us are trying to sleep. My son bought himself a food flask and puts soup in it or anything else that he can heat up and add to it and he has found that this at least allows him to eat something hot. So while I have learnt to live with this my son is aware that I do not like it and won't have an 'Open All Hours 24/7' style of living. The rest of us need to sleep and I can not do that if my son is wandering about the house. Cat

I am sad because it means that my son can never truly be himself society will not accept him as he is. I could quite understand this if he was potentially dangerous but I find not being allowed to be disabled quite scary. I do however internalise the negativity and am immensely proud of the fact that my son can do these things now. Anyone who uses a wheelchair and learns to improve or maximise their opportunities will understand why they have done that. I am not sure that my son does understand why he is doing these things only that he has to do them because it is expected of him. I think that that is the big difference. It is not solely an autistic issue it's a disability issue. It is a fact that if you have a disability that that disability will impact in some way on your life, otherwise why says that someone is disabled? And yet there is a great amount of pressure applied to disabled people to act as 'normally' as possible as if there is something very wrong with being disabled. Who decided what normal is and why must we all strive to achieve this? I will do my level best to help my sons to appear to be normal because that is what society dictates of them. As a society we lack compassion and understanding and are in denial that human beings come in many different shapes and sizes. Humanity does not fit neatly into a box and that is clearly seen here on these boards almost every day of the week. It is even harder if your disability is un-seen because you must then work hard to overcome it because hey you look no different to anyone else. I find that very scary. Cat

My son is 22 next month and we un-officially home educated him from the age of 11 and officially from him being 15. He was in year 7 when he had a breakdown which followed him being hit by a car on his way to school, he never returned, and he was in year 11 when we finally pulled the plug and became official home educators. Cat

Hmm well I have now had the time to pick the bones out of this debate and I am not as optimistic as I first of all felt. After going through the debate again with a fine tooth comb – which I have done because I am a member of the External Reference Group (ERG) that keeps being referred to during the debate, yes I still feel that many of the MPs do actually get it – However – when you look at all of the comments made by Ann Keen (who was standing in for Phil Hope that day) and who is the voice of the Government and will have the say and sway over what finally makes it into the Strategy, you see a much clearer picture and the reality of what we will probably end up with and that is not going to be what the other MPs are saying is needed. The Government has real issues with the National Audit Office report. I wonder why? I could hazard a guess that it is because it says that there is much to do especially for those adults with AS and HFA. The Government is now going to undertake its own research. I wonder why? So that it comes up with something that they find more acceptable perhaps. I had already heard much of what Ann Keen was saying (but it was not being said by her) when I attending the last ERG meeting and I came away from that meeting feeling totally deflated because what I was hearing was all about ‘using existing provision’ ‘no need for specialism’ ‘Services must be mainstreamed’ ‘the need to attach the content of the Strategy to an already existing framework. Basically is this happens autism is going to be tagged onto frameworks which already exist. I did ask how this was going to be done where nothing exists – how do you tag something onto nothing? Of course services must be mainstreamed but surely they must be informed and trained by those who do have specialism? Specialism was mentioned by Ann Keen during this debate and it is something which I am going to make sure is raised with not only the ERG but also the NAS. The ERG are being told that we have to look at a base line and what is the least we can expect to have in all LAs. Do it this way and this is what we will get the least they can get away with providing. How do you build on nothing? It is absolutely imperative that people respond to the Consultation because we need to make it clear that autism is not an ‘add on’ and by this I mean that we find the Strategy being made to fit into a box which was never intended for autism. That is what we have now and it’s neither what we need nor is working. Cat

My son was out for 5 years yes that's right 5 years Of course that was a few years ago now. He was 11 when he had a breakdown and he never got back to school. He was in year 11 when my husband said that because we had been un-offically home educating him during the last 5 years that we might as well make it official. he was very cross because during that time the school continued to receive funding for our son. We were offered two unsuitable placements although we did try them both. Had home tuition which was carried out by someone who had no understanding of autism at all and who was an Art teacher (which we had nothing against) but we were quite capable of picking up his school work and bringing it home for him to complete. Cat

http://www.publications.parliament.uk/pa/c...ndx/90619-x.htm The most important thing about this debate is that it reads like they FINALLY 'get it'. If you have the time please read the debate it is certainly worth a read. Cat

My 22 year old has always spun, never gets dizzy or feels sick and never falls over. That said he rarely spins these days although he did a great deal when he was a child. Cat

The National Children's Advocacy Center is an American Orginisation. I am amazed that we are using their indictaors especially seeing as the National Autistic Society fought so hard to have a very similar set of indicators published by our own Department of Health removed in 2002. They were successful. I will be checking this one out with the NAS asap. Cat

I think that you have expressed yourself very clearly here so what about writing everything down that you have posted here including anything else that you might need either to ask or for the staff to be aware of and take it with you when you go to the hospital. You can ask for it to be added to your notes so that everyone can see what you have written. My son (who has AS) finds it much easier to write down his needs and concerns than expressing them verbally. He even write notes to me. You could even write what is known as a passport which is something that they now often use in schools. It gives information about who you are and important things about you. If I have a hospital appointment myself I always write down things I want to say and have often just handed the list over to the Consultant. It works really well because you do not forget anything and you get the answers to your questions that you need. Cat

L&P I think that you had best lie down before you read this BD because I totally agree with you I am happy to, and do, engage with the DCSF to endeavour to find some common ground and a way forward. Home Edders are not an Island and nor should they be and I will not be popular for saying that but when did that ever stop me But I did believe that it was important that the review were aware that some of us were not home edding as a lifestyle choice. That point was made and accepted. It is also now important that some of the wording in the recommendations is looked at again because some of us are home edding SEN children and I am pretty hopeful that this will be taken on board to - fingers crossed - we do not have a fingers crossed smilie Cat

I think parents who home ed a child with a disability would find it difficult to hide - and to be honest with you I personally would never want to. Many of us are seen on a regular basis by professionals like Consultants, SALTs, OT,s Physios etc etc and so in a way are they not our 'second line' of defence from abuse. It's not being seen that I object to I have always operated an open door policy where our sons are concerned because that is the way we wanted it. It's been seen by people who have no understanding of autism and how it can impact on your everyday life that scares many of us. My own LA have always been brilliant with us and I am really hoping that that is not going to change as a result of the recommendations. I do not want to be educating my son wondering is someone is going to come along and pull the plug at anytime simply because they do not understand his autism. That is the reason why he is no longer being educated in a school. Ours was never a lifestyle choice it was something we had to do. It's not easy having a high functioning child who is too bright to tick all of the boxes for a statement, who presents as being too normal to warrant any extra help but who is too autsitic to cope without it, and whose mental health is suffering to the extent that he is almost unable to function at all. Special School was never available to us and so we did what we felt was best for our son at that time and have never regreted the decision to do so. I have been home educating for almost 12 years now and yes I am sad that I am no longer to be trusted to have my sons best interests at heart and yes I know that some parents do not but that does not stop me from being quite cross about this at the moment. Cat

Which is why we must do our best to make sure that the wording in some of the recommendations is altered to ensure that this can not happen unless there are very 'real' concerns. Cat

Bid Thank you. You have summed up how many of us feel. It's the wording that we have issues with and I have to say that NAS shares those issues so I suppose that that is something to hold onto. I have no problem at all with the LA making sure that we are actually providing our son with an education as defined in section 7 of the Education Act Duty of parents to secure education of children of compulsory school age The parent of every child of compulsory school age shall cause him to receive efficient full-time education suitable— to his age, ability and aptitude, and to any special educational needs he may have, either by regular attendance at school or otherwise. I actually have no problem with safeguarding children. The vast majority of parents who are home educating children with SEN are already known and are seen on a regular basis. I know that we are. Home Educators are a cross section of society just like any other sub group of society. Within any sub group you will find people who will abuse their children. Home Educators are no more likely to do this than any other sub group. Many of us took our children out of the system because the system was failing our children and some leading professionals are on record as saying that the system is in some cases guilty of abuse. The Children's Commissioner actually said that the system was not fit for purpose. The wording needs to be tighter within the recommendations (the NAS are saying this to) it needs to make sure that 'everyone' is quite sure what their role is when it comes to home education. LAs need to be clear and parents need to be clear. As it stands at the moment there is too much room to manoeuvre. Cat

Nellie as always Cat

My now 22 year old son was hit by a car while going to school at the age of 11 and he suffered what they said were minor head injuries but I have always felt that his AS exploded at this point and I do mean exploded. Until then he had always been quiet and introverted after the accident he became very aggressive. He also became much more rigid and inflexible, literal and his sensory issues also exploded. His AS was actually only diagnosed 2 years after the accident. Like Mumble I know that it was there before that but it was in no way as ‘in your face’ or as debilitating for my son as it was after his accident. I got sick of asking people if the change in my son had anything to do with his head injury. I also asked this while he was being diagnosed. I asked for MRI scans for years after the accident but was always refused them. They felt that the accident had nothing to do with the huge change in how he was presenting. I do not agree. One of my best friend’s husband who was busy exploring the possibility that he, as well as their little boy, could have AS was involved in a horrific accident while he was trying to decide if he should have an assessment. He was in a coma for 10 days and his road to recovery was long and painful. He has also developed epilepsy as a result of his head injury and like my son what was before the accident very subtle is now impossible to ignore. We have both agreed with each other that their head injuries appear have really outed their AS – if that makes sense? This is something I have wanted to explore for a very long time now and this post might just make me do something about my feelings around this issue. Cat

My youngest sons tantrums were at their worst between the ages of 4 and 5 and then they did begin to subside. My son still continues to hate anyone looking at him to this day, and like your daughter if they looked at him while he was having what we called a melt-down he would become much much worse. So no it was not that he wanted attention either. I well remember him screaming in his buggy 'Don't look at me - Don't look at me' as people passed by. If we are out anywhere and my son thinks that someone is looking at him we have to move. We were in a restuarant not so long ago and he was convinced that the people opposite were looking at him and we had to change tables. Cat

This was pretty much the same check list that I could of posted when my youngest son was 3 years old. I do buy into they can hold it all together while they are at school theory because both of mine did. I have two sons with autism and both presented very differently but both held it together in school, to the point that the eldest of the two had a total breakdown aged 11 which I firmly believe was a result of him being a model pupil for so many years. I am not a bad parent I had and continue to have very firm rules and boundries. Having supported many parents who have autistic children I have reached the conclusion that autistic children can and do hold it together outside of the home because other enviornments are alien to them and they cling onto any sense of sameness to enable them to cope. In the case of school although they appear to respond well to the structure and routine they often have no understanding as to why they have to do so and as a result can flip when they leave that setting and return home. I also believe that many autistic children will go with the script they expect and is expected of them in schools until they reach an age when they finally realise that they do not have to and that they can kick off at school. Year five appears to be a turning point in school life for quite a few autistic children. Nothing prepared me for the way my yougest could kick off over nothing at all. Drinks were a nightmare. I could never be certain what he expected to see in his cup and if the level of liquid was not just right a tantrum would result. We had this to over the level of bath water in the bath if it was not quite right we could be there for hours with a 3 year old screaming at us 'It's not right!' while refusing to go to bed until he had a bath that he hated. He was rigid and inflexible and has multi-sensory issues which added up to one wild and troubled little boy. On the plus side he is now 12 years old and a truly lovely little lad who you would never believe has so many issues and tantrums when he was younger. We lived through it and came out of the other side older wiser and with a child who is now for the most part happy. We can all tell you how it was for us and what we will and will not buy into but you know your daughter best and if you have concerns then go with your gut instinct and act on them. Cat

Children go to school to be educated not monitored don’t they? At least that has always been my understanding. The goal posts are moving and as Tessa has said who will be next. This is not scaremongering because this issue facing home edders now goes much further than home education. In fact has very little to do with education at all. Our educational provision is monitored we see someone from our LA and have never had any problems at all. That is the way I would like it to stay. The LA making sure that I am educating my son I am quite happy with. Making sure that we are not abusing him is something else altogether. Cat

There has been one case where a child was removed from school and tragically ended up dead. One case is of course one too many I totally agree with that. But children who attend school on a daily basis are also abused and it goes totally un-noticed. Unless someone moves in with you (or we go the whole 1984 hog and have cameras installed in all of our homes so that the state can see everything) there will continue to be tragedies. The majority of children who are abused are already known to social services. This was certainly the case with Eunice Spry who was abusing her adopted children even before she removed them from school to home educate them. The SS file on Spry goes back to before she even applied to foster her children never mind adopt them. The system failed those children badly. I think the thing that I personally strongly object to is that those of us who home ed are now affectively guilty until proven innocent with regard to safeguarding our children. The monitoring of their education is an entirely separate issue. Our children must be seen by someone who the state is going to decided is suitable to decided if we are safeguarding our children. I do not think that the majority of society understands that this is not only a serious slur on home educators but it is yet another step towards a ‘nanny state’ where the state is deemed to be more capable at bringing up our children than we are. Some children are at risk while they are in the care of those who the state is saying we should be entrusting our children to. Only this week we have seen a horrific example of this splashed all over the news and the papers. A very large percentage of parents who are home educating their SEN children are doing so because their needs were not being met in school. Some of these parents believe that their children were abused by the system and so did what most parents in that position would do and removed their children. Being a home educator does not make you any more or less likely to abuse your children, which is really what this is all about, the review was wrapped around safeguarding issues which have still not be proven. Home educators are like any other group of people and are made up by a cross section of society and in that cross section you will have people who will abuse the power that they have over children. I personally think that this review has very little to do with home ed and everything to do with the screws being tightened on all parents and as a group home educators had to be brought into line. If it stops one child from being abused and murdered all well and good only time will tell. Carole

Thank you Bid this explains why DS3 closed has closed his eyes throughout his dental treatmeant. I knew that he was being very brave and that it was costing him dearly but you just made sense of why no matter how long he was in the chair he had his eyes closed. Cat

My 12 year old who used to be explosive is now like this and to be honest with you I find it harder to deal with. My son can often feel and be physically sick when he is like this and needs to lie down on his bed. It can last for several hours. His shutdowns can be triggered by many things include smells. If he is worried about going somewehere or doing something or if there are too many people 'demanding' something of him. He will shutdown. He has a huge sensitivity to smells and can shutdown very quickly if he has smelt something he can not tolerate. I hate watching my son when he does shut down because he looks dreadful. Cat